The following blog post by dementia advocate Amy Shives, was originally posted on the website at this link, and is reposted with Amy’s permission.

Amy’s humour, no-nonsense manner, and insightfulness make you feel like she is a friend who is taking you by the hand and showing you what’s what. I feel privileged to be able to, thanks to Amy’s handholding, get a tiny glimpse of her life and experiences, and to bring them to you through her most excellent article.

In her post, Amy talks about what it’s like to be confronted daily with the stigma of dementia.

It’s Not Easy

As I began to think about writing a piece on the issue of stigma as it relates to Alzheimer’s disease, it occurred to me: I needed to clean the refrigerator. Immediately. Then there was that bed-making chore, complete a household search for any kind of candy (fail), and a need to write a long overdue thank you note.

RefrigeratorI believe that everything that we encounter and how we react to perceived events molds us into what we are, and thus how we think and behave. That being said, it appears that I avoided writing on the topic of stigma to the point of doing unpleasant, alternative activities instead. Why is this?

I personally fight against the stigma assigned to people with dementia. My label, dementia-of-the-Alzheimer’s-type – atypical, affords me many opportunities to be bombarded with statements that make me feel badly on a daily basis. A few of these include:

“You’re too young to have Alzheimer’s.”

“You look fine.”

“How do you know you have it? I forget my keys all the time. Maybe I have it?”

“My grandfather had Alzheimer’s but it was okay, he was old and he didn’t know what was going on anyway.”

“You better go see a lawyer, NOW.”

And my personal favorite, “You are too smart to have Alzheimer’s.”

Sometimes the stigma is not spoken – at least not to me. Many people assume that I can no longer function at any reasonable level. I have been uninvited to meetings, parties, gatherings, lunch dates and celebrations. I have become a damaged, unqualified, pitiful person in others’ eyes. The most painful thing for me is that often the people treating me as less than a person are my friends and relatives who don’t intend to hurt me. Never mind the public — their views can be rationalized, as they don’t know me. My friends, however, do.

Similar Experiences

Most of us experience at least one or more times when we feel stigmatized. To feel marginalized, isolated, ostracized is a sure sign that some sort of stigma has been assigned.

When I was a child I was fat. Best way to say it is simple and to the point. I believe that anyone who was a fat child understands the stigma and life altering changes that take place when a child in their formative years experiences out-and-out rejection and abuse. It changes who we are.

Many times in our society, forms of stigma are rationalized by blaming the victim. “Lose weight and they won’t call you fat.” Or, “Cancer diagnosis? Oh, did she smoke?”

And so it goes, blaming the “victim.” The personal behavior of the person applying the stigma is not up for scrutiny. Blaming the victim becomes very neat, orderly, and very self-congratulatory for the stigmatizer. “They deserve what they got and I don’t because I didn’t do X. I’m okay, you’re not okay. Bummer for you.”

Oh, and I’m still fat.  Can’t catch a break. Bummer for me.

Alzheimer’s is a dreadful disease that has no treatment or cure. It is fatal and slowly robs the person of their personal skills, needed to master life’s challenges.  When we are stigmatized, our capabilities are reduced prematurely into the end stage of the disease — while we are still very able to live life to the fullest. This is how stigma feels to us. Not feeling like a whole, intact human being is a daily – no hourly – fight we fight, in addition to the disease process happening to our brains.

Talk about unfair. Really? Treat the person with the fatal disease poorly so we don’t feel vulnerable to the affliction.

I have found new joy and purpose in my life. That is not to say this was my choice. I’ve tried to make lemonade out of lemons, as they say. We cannot always choose how we will evolve in this life. My lemonade is still quite bitter most days.

My question is this: If people are to have differences, as they will because they are people, then why stigmatize all of our differences? What a complete waste of time.

While learned people strive for cures for many human ailments, some successes have been gained. It seems to me that the common denominator for all of these afflictions is the clear, ritualistic use of stigmatizing the very people that we aim to treat or cure.

Maybe we should all place our personal stigmas we are assigned to deal with into a really big bucket. We could all pull out random, new stigma labels for ourselves. Maybe then we could begin to understand how utterly stupid and arbitrary our stigma assignments are. We could use our efforts in so many more productive ways then to divide and categorize. People of course must determine for themselves where to begin to cleanse themselves of this.

I will start with cleaning my refrigerator.  

ShivesAmy Shives was diagnosed with younger-onset Alzheimer’s disease in 2011.

After graduating from Western Washington University in 1979 with a bachelor of arts degree in psychology, Amy went on to receive a master’s in education with a concentration in student personnel administration. For over 25 years, she was a faculty member at Spokane Community College where she worked as a counselor.

After receiving the diagnosis, Amy left her career as a college counselor and became an Alzheimer’s advocate. She currently serves on the Chapter Board of the Alzheimer’s Association Inland Northwest Chapter, is a member of the Alzheimer’s Association’s National Early-Stage Advisory Group, an Alzheimer’s Ambassador to U.S. Representative Cathy McMorris Rogers from Washington State, and a Walk to End Alzheimer’s® committee member and team captain. She is an active participant on the Washington State Policy Committee and has participated in numerous local media and speaking engagements. Amy is currently a participant in several clinical studies through the University of California, San Francisco Memory and Aging Center. The studies include genetic and behavioral studies, as well as longitudinal studies that observe people over time. As a clinical study participant, Amy plans to donate her brain upon death.

Amy lives is Spokane, Washington with her spouse. Together they have two daughters.